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Jen

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  1. Welcome, Liz. I also have NCS. I'll describe a bit about my experience. I had a pacemaker implanted two years ago (when I was 20). It was implanted because my cardiologist discovered that I was experiencing asystole during my fainting episodes. I was told to get the pacemaker right away, as the periods of asystole were only going to get worse. My cardiologist made it seem like the pacemaker would be a cure-all and I would be able to stop taking all of my heart meds (midodrine, florinef, and a beta blocker). Unfortunately, I still continued to faint after I got the pacemaker and had to go back on all of the meds. However, I do have hundreds of rate drop episodes recorded each time I go for a pacemaker checkup, and for that, the pacemaker has been amazing. I faint much less frequently now (well, I am going through a rough patch lately). The pacemaker does not help with times that my blood pressure crashes. It is important for you to find out what causes your NCS. Is it a drop in heart rate or a drop in blood pressure? These do go together, but I've heard it's important to find out which happens first, such as through a tilt test. If it's a drop in blood pressure, a pacemaker is going to be much less effective. As long as you aren't experiencing severe bradycardia, I would try non-surgical approaches first. If you aren't satisfied with the way your cardiologist is managing your problems, don't be afraid to try someone else. Good luck. ~Jen
  2. I'm from Des Moines, Iowa. I was born in St. Louis, Missouri, but have lived in Iowa most of my life. Over the past few years, I've also lived in Iowa City, Iowa; Rockville, Maryland (near D.C.); and Minneapolis, Minnesota for various internships for school.
  3. Thanks Sally for the additional information on EDS and autonomic problems. You mentioned that your rheumatologist explained why there was a connection between the two. Do you remember what he said? Would you mind sharing it? I'd like to learn more about why these two go hand in hand. I'm new to the diagnosis of EDS and still am trying to figure that all out. ~Jen
  4. Merrill, thanks for the suggestion on using a chair when I take a shower. I'm living with my parents as I recover from surgery and they have a shower with a built-in chair and side rails. That has helped immensely, so whenever I'm feeling fainty I'll shower in there. I might have to look into buying one when I'm back at school. Emily, thanks for relaying your problems after surgery as well. It helps knowing that what's going on to me isn't so uncommon. I've already started having problems on this higher dose of florinef - constant headaches and high blood pressure. Going to give it a few more days, but will probably be putting a call into my cardio and going back to the lower dose. Wish this would have helped. It gets frustrating because it seems like I always have trouble staying at a normal blood pressure. The meds either bring it too high or low low, and I don't feel well at either. Julie, thank you for describing your experience with EDS and POTS. This physical therapy is actually probably going to help in stabilizing my joints, as they had become bad before surgery. I've had problems with my hips, knees, fingers, and shoulders subluxing/dislocating, and since surgery have not had my hips or knees dislocate or sublux. Are neck and spine problems common with EDS? You and Nina both described having these problems. Is that what chiari is - a spine problem? I hope that can get better for you. It's good to know for me to know what might be coming. I was told to expect chronic pain for the rest of my life, but the geneticist I saw didn't know anything about autonomic problems. ~Jen
  5. Hi, I can only speak from my own experience, but I was also able to handle beta-blockers with my asthma. I discussed it with my cardiologist and pulmonologist and decided that it would be best to be on it. Without it, my heart rate was consistently over 150, even while resting, so that wore me out pretty quickly. If I remember right, there are different types of beta-blockers, some of which have less action on the lungs (they might have been called cardio-selective - sorry, it's been awhile since I had that conversation ). One tip that I learned is that certain types of rescue inhalers can make you feel like your heart is racing more than others. After blacking out after using albuterol, I decided to ask my pulmonologist if there were any other options, as I didn't want to be fainting and having an asthma attack at the same time. I was told to try Maxair (pirbuterol) and I haven't had that racy heart feeling using it. Some people are more sensitive to albuterol than others, is what I was told. Hope this helps. ~Jen
  6. Steph, thanks for the additional information. Those are some great ideas and if even more calories in my diet don't help, then I will look into creatine. I was using Reglan in the beginning because I would get very nauseous even looking at food and with it I finally did regain an appetite. I have started to regain some muscle mass in my legs - I do physical therapy twice a week and the prescribed exercises on my own twice a day for about an hour at a time. I'm not using weights yet in PT as the tibia and fibula bones were broken at the ankle, so it would hurt to use ankle weights yet. I do use bands on my feet to regain ROM in my ankles.The bones aren't quite healed yet, so mainly I do some strength training, some balance training, and also relearning to walk again. As far as my cardiologist, I've already been to two others who gave up on me and so I don't want to lose this one, even if he isn't the greatest. He co-authored the book on syncope with Dr. Grubb, so I have hopes that he will keep up on the latest treatments. If this increase in florinef doesn't do the trick, I'll definitely speak up and try something new, even if that means finding a new doctor. Hope your recovery goes well and you can get out of that cast soon. Persephone, wow, that's strange that we do have the same problems and are the same age. I actually just turned 23 this past month (May 1), but we still are fairly close in age. Thanks for welcoming me.
  7. Well, I had a bit of a disappointing appointment yesterday. I saw the cardiologist for only a few minutes. He is just bumping up my florinef to .3mg a day. He feels that most of my problems are due to my weight loss from surgery (I lost 20 pounds due to severe nausea and being so immobile, and I was already skinny). Until I can get that weight back on, I'll continue to have problems. I ate lots of extra food this past month, extra snacks, bigger meals, etc, but only put on about three pounds. My cardiologist wasn't willing to discuss trying other medications. I brought it up, but was told that florinef is the only drug that will help me. So, I have a few more questions today. Have others had problems with weight loss, and do you have any tips on how to pack on more weight? Is it common to feel worse in the morning? I've had to move my showers to the afternoon or evening, otherwise I get too close to fainting. The same goes for physical therapy - if I have it in the morning, I usually get pretty bad, but if I have an afternoon appointment, I do much better. Thanks, Jen
  8. Thank you all so much for welcoming me and for the advice you have already given me. Steph, I did start physical therapy and am doing quite a bit of strengthening and balance activities. Those were some great suggestions that I will definitely try out. Actually, I've been doing wall squats, but that is what usually makes me close to fainting (I always have to have a chair nearby). I'm sure it's something that will just have to improve with time. I had surgery to correct severe rotational deformities of my legs (congenital), so I had both femurs, tibias, and fibulas broken and realigned. So far the bones have been healing well, but I've had problems with other surgeries in the past. What suprised me the most was that I didn't have problems with the wounds closing, as I did with my pacemaker surgery. I did lose most of the muscle mass in my legs from being immobile, so hopefully if that's what has caused everything to go haywire it will improve with time. Thanks, Nina, for warning me that it could take awhile to get back to what I was like before surgery. Thanks also for the suggestions about the medications. I'll talk tomorrow with my cardiologist and hopefully he will be willing to try something new. I have been on a high salt diet, but gave up on compression stockings. I tried them a few years ago and continued to black out just as bad as without them, so gave up. Maybe I will consider trying them again. I'll probably have more questions, especially after my appointment tomorrow, but thanks already. You all seem like a great group of people. ~Jen
  9. Hi, I?m new to the forum. I was diagnosed with neurocardiogenic syncope at the age of 18 (I?m 23 now), but I started fainting around the age of 12. I had a pacemaker implanted at the age of 20 when my cardiologist discovered my heart was stopping during my fainting spells through an event monitor that I was wearing. That has seemed to be a great help when my heart rate bottoms out quickly (which happens frequently), but when I have very low blood pressure, I still black out or faint. I?ve tried numerous medications and the most recent combination I?m taking is florinef, midodrine, acebutolol, and neurontin (for severe headaches that I get when I black out), as well as medications for asthma and GERD. This combo has some of my symptoms at bay, though I still can?t stand still for very long or be out in the heat. I had major orthopedic surgery two months ago and since then my fainting problems have become much worse. Some days I black out every time I stand up (from very low blood pressure ? sometimes at low at 55/40). I also have been close to fainting numerous times each week and must lie down immediately. This is dangerous because my bones are still healing and I CAN?T risk falling right now. I saw my cardiologist a month ago and the only change he made to my medications was to up my florinef to .2mg daily. The reason I?m posting is that these problems haven?t improved much over the past month and I have a follow-up appointment tomorrow. I want to come in this time with some ideas of what else could be done (I already do other measures like added salt, more fluids, etc). Last time my cardiologist mentioned the possibility of trying erythropoieten or octreotide next, but said that my hemoglobin level didn?t indicate me trying erythropoieten, as it wasn?t low enough. Does anyone have experience with either of these drugs? I also recently heard of a drug called mestinon and didn?t know if that was worth bringing up tomorrow either. My other question is that I noticed when looking through some of the posts on the forum, that some of you also have Ehlers Danlos syndrome. I was diagnosed with that at Mayo Clinic this past fall. Are NCS or other autonomic problems common with EDS? If so, does that imply that I will continue having fainting problems forever? I would really appreciate any thoughts and ideas you might have. Thanks, Jen
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